Dusted community: piloting a virtual peer-to-peer support community for people with an asbestos-related diagnosis and their families

Our plain-English summary of Dusted community: piloting a virtual peer-to-peer support community for people with an asbestos-related diagnosis and their families, by D. Kozlowski, S.C. Provost, J. Tucker, et al (Journal of Psychosocial Oncology, 2014).

The study

• Authors: D. Kozlowski, S.C. Provost, J. Tucker, R. van der Zwan
• Journal: Journal of Psychosocial Oncology
• Published: 2014;32(4):463-75
• Cited by: 6 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Individuals with an asbestos-related diagnosis and their carers face burdens including debilitating and life-limiting physical symptoms and medico-legal stressors. Feelings of social isolation are common. Increasing social connectedness can lead to increased feelings of personal empowerment and may inhibit chronic stress responses. The authors report on the development, via a process of participatory action research, of an online peer-to-peer support group, and the first 30-day test phase of this virtual community. Initial indications are that individuals with an asbestos-related diagnosis and their carers can benefit, in psychosocial terms, from membership of an on-line support group comprised of experientially similar others.

In plain English

This article described the development of the Dusted Community, an online peer-to-peer support group for people with an asbestos-related diagnosis and their families, set up by researchers at Southern Cross University, Australia. It reported the first 30-day test phase after the site opened in late 2013. The site was designed through participatory action research, which included several months of consultation with members of the Asbestos Diseases Foundation of Australia. Of 14 registered members, nine were "dusted": four people with a diagnosis (three men, one woman) and five carers (three current, two bereaved). After 30 days, three carers (60%) and one member with a diagnosis (25%) had posted a profile photo, and all of them were women. Two carers (40%) and two members with a diagnosis (50%) had posted content. The authors counted five members (55%) as actively engaged. The other four had logged in more than once without contributing. All posts were positive. The authors concluded there were indications the community may provide a positive forum for social connectedness. They noted that the group was small, the period was short, and the information was not convincing evidence of positive outcomes.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Descriptive pilot report on developing an online peer-to-peer support group through participatory action research, covering its first 30-day testing phase
• Who was studied: 14 registered members of an online community run from Southern Cross University, Coffs Harbour, Australia, opened late 2013. Three were research team members and two were partner organization representatives. The other nine were people with an asbestos-related diagnosis (4) and carers (5).
• Exposure: Not reported. The article does not describe members' asbestos exposure (fiber types, jobs or products) or their specific diagnoses. What was studied was membership of an online peer support site.
• Main results:
  • Among the nine 'dusted' members, four had a diagnosis (three male, one female) and five were carers (three current, two bereaved).
  • At 30 days, three carers (60%) and one member with a diagnosis (25%) had posted a profile photo. All who did so were female (66% of women, 0% of men).
  • In the first 30 days, two carers (40%) and two members with a diagnosis (50%) had posted content. This was 50% of women and 33% of men.
  • Five members (55%) had actively engaged with the site. The other four had logged in more than once but had not contributed.
  • All posts and comments on the site were positive and encouraging.
• The authors' conclusion: The authors concluded there are indications that the community may provide a positive forum for facilitating social connectedness for its members.
• Limitations the authors state:
  • The group of testers was small and the period reported was short.
  • The authors stated the information reported is not convincing evidence of positive outcomes for members.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

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